Together and apart: Spousal caregivers’ importance for their partners with dementia in everyday life

Abstract Maintaining physical abilities is a significant factor for people with dementia in promoting coping with everyday life and wellbeing. Formal care services are often inadequate to enable regular physical and social activity, which play a major role in postponing the increasing needs for care services resulting from the progression of dementia. Hence, support from spousal caregivers is often paramount. We explored, utilising content analysis, how spousal caregivers (n = 20, average age 74) enabled their spouse with dementia (n = 15, average age 76 years) to be physically active and manage the activities of daily living (ADL), and what kinds of difficulties caregivers perceived when implementing their support. Our data included semi-structured qualitative interviews (n = 35) conducted in 2018 and 2019. Spousal caregivers acknowledged several manners and utilised various strategies to support their spouse with dementia to be physically active and cope with ADLs. Interviewees described that in the early stages of dementia, the spouses were physically active and did ADLs independently or together with the support of the caregiving spouse. E.g., the caregiver encouraged their spouse with dementia to go for a walk or they went out together if the spouse with dementia could not do it independently. However, as dementia progressed, the caregivers conducted physical activities more often alone and additionally took care of the ADLs and varying care needs of the spouse with dementia. This shift caused caregivers severe fatigue, sadness, and even stress. Currently, the older persons with dementia but also the modern health and social care service system are utterly dependent on the contribution of the spousal and other informal caregivers. Caregivers are largely responsible for promoting and maintaining the physical and social functioning of people with dementia. Maintaining the functional capacity of people with dementia can reduce or postpone their need for health and social care. Key messages • Spousal caregivers play a vital role in supporting their spouses living with dementia, enabling activity and daily living, yet they face fatigue and stress, with little societal support. • Caregivers’ support may delay need for formal care services, highlighting importance of informal caregivers’ rest opportunities, financial aid, and societal acknowledgment.